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Advocacy

Why the UK needs a national register.

Every death from an allergic reaction is a tragedy. Without proper data we can't learn from these losses — or prevent the next ones. A mandatory national registry would change that.

The problem

We're flying blind.

We don't have reliable data on how many people die from allergies each year in the UK, or under what circumstances. It's not because these deaths don't happen — it's that our current system doesn't capture them properly.

Incomplete reporting, inconsistent coding, and the lack of a centralised system mean many fatal — or near-fatal — reactions never get aggregated or analysed. When a death is recorded as "cardiac arrest" or "asthma" without mentioning the underlying allergic reaction, we lose critical information.

This undermines prevention. Regulators, food businesses, and public health authorities can't spot patterns or target interventions effectively. That costs lives.

What we have

And why it's not enough.

The UK Fatal Anaphylaxis Registry (UKFAR) has collected data on fatal anaphylactic deaths since 1992. Managed by the British Society for Allergy and Clinical Immunology (BSACI), it has provided valuable insights into patterns and risk factors.

But reporting to UKFAR is voluntary, not mandatory. Many deaths go unreported. Coroners, hospitals and families may not know about it, or may choose not to participate. The result is incomplete data that doesn't reflect the true scale.

Leading allergy charities, coroners and public health experts have repeatedly called for a statutory national register — one that ensures every death (and near-fatal incident) is recorded. This isn't a new idea, but it needs urgent action.

Why it matters

What a register would change.

Better prevention through data

Comprehensive data shows how, when and where fatal reactions occur — which allergens are most dangerous, which settings carry the highest risk, and which demographic factors matter.

Systemic improvements

Robust data lets regulators, policymakers and food businesses understand failures — mis-labelling, cross-contamination, unclear menus, inadequate training — and enforce safer rules.

Transparency and accountability

Families, advocates and the public deserve to see how often these tragedies occur. Transparency drives awareness and policy change.

Supporting research

Epidemiologists and allergists need robust data to improve guidelines, prevention strategies, public awareness campaigns and treatment protocols.

Capturing near-misses

A national register could also capture serious non-fatal reactions, improving safety across restaurants, manufacturers, schools and other settings. Near-misses are learning opportunities.

Obstacles

What needs to change.

  1. 01.

    Mandatory reporting

    Reporting must be mandatory, not optional. All relevant deaths (and serious reactions) need to be captured. Coroners, hospitals and relevant bodies must be required to report.

  2. 02.

    Standardised coding

    Cause of death must mention "anaphylaxis" or "allergic reaction" — not be buried under "asthma" or "cardiac arrest." Medical coding should reflect the true cause.

  3. 03.

    Privacy by default

    Balance public interest with respect for privacy, especially for minors and grieving families. Aggregate data for public health, individual data protected.

  4. 04.

    Sustained funding

    A registry needs ongoing funding, staffing and oversight — treated as essential infrastructure, not an occasional grant project.

  5. 05.

    Coordination across systems

    Coroners, hospitals, public health authorities, food regulators and researchers need clear protocols, training and communication channels.

Momentum

What's already being done.

Beyond UKFAR, newer efforts like the UK Anaphylaxis Registry are working to capture allergic reactions more broadly — not just deaths.

In 2025, experts and campaigners have renewed calls for reforms: mandatory inquests for all anaphylaxis deaths, a statutory national death database, and better reporting of near-misses and serious reactions.

With increasing food allergies in the UK and rising hospital admissions, now is the time. The infrastructure exists — we need the political will and legal framework to make it mandatory.

Take action

What you can do.

For visitors

  • Write to your MP about the need for a mandatory national allergy death registry.
  • Support charities working on this (Anaphylaxis UK, Allergy UK, BSACI).
  • Share this page and raise awareness in your networks.
  • Report serious reactions to UKFAR or the UK Anaphylaxis Registry.

For policymakers

  • Establish legally mandated reporting for all anaphylaxis deaths.
  • Create a statutory national database with proper funding and oversight.
  • Improve medical coding to ensure allergic reactions are properly recorded.
  • Extend reporting requirements to serious non-fatal reactions.

For food businesses

  • Voluntarily support transparent reporting of serious allergic incidents.
  • Invest in proper labelling, training and cross-contamination prevention.
  • Proactively report serious incidents to relevant authorities.
  • Work with allergy organisations to improve safety standards.

Your voice matters.

If you have allergies, or have lost someone to a reaction, your story can help drive change. Share it. Support the organisations. Push for reform.

Get in touch

Data limitations: any existing registry is only as good as the reports it receives. Absence of data doesn't mean absence of incidents — often it means underreporting.

Medical disclaimer: this page advocates for policy change, not medical advice. For specific questions about allergies, consult your GP or allergist.